Hi, hope all is well with everyone! Not sure if enyone remembers, but Hayley has two arachnoid cysts causing hydro. Located in suprasellar region, squashing pons on brainstem, effacement of optic apparatus, pituary gland septated around optic nerves etc. etc. etc. Born with this, major crainitomy, shunt, 2 revisions. Now has endocrine problems, has to take growth hormone supplementation B/C gland not producing any. Found about a year ago cyst grew back a bit, (cannot be removed totally, only fenestrated). Also has slit vents. Current NS and one in NYC say watch closely for "sliding in wrong direction" before doing anything (i.e. valve replacement and another fenestration via craintomy). So Dr. Walker threw a wrench in everything at the Hydro assoc conferance saying it should be addressed right away. Another NS in San Diego, referred by a friend, looked at films and said the same. So I contacted DR. Rekate in Az, sent films etc, finally heard from him, said plan was to do consult, myelogram , either clamp shunt and do ICP monitor or revise, since "overdrainage is malfunction", maybe the fenestration. So I emailed back saying I would be willing to go for consult and tests, but did not want to decide on surgeries until after those, I will then present results to her NS in Boston, B/C I am not having her undergo major surgery so far away! So, maybe some light at end tunnel.